My name is Kristine, I am a wife to Tom Hendricks, mother to Nik, Ashley, Tommy and Tyler. We live in Saint Louis Missouri. I started this blog after Tyler was diagnosed with Cystic Fibrosis. Not only do I hope to keep our family and friends up to date, but also for me to have a place to go with my thoughts. I have found others that understand what I'm going through, that have been there already or are facing it all as I am.
Tyler's mutations are deltaF508-621+1g>T
Creon - 1 and 1/2 capsules with every feeding CPT- twice daily 15 minutes per session
_Cystic Fibrosis *CF* is one of the most common genetic diseases, especially in Caucasian populations, & affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, and causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and deficiency of pancreatic enzyes, which keep the pancreas from breaking down and absorbing foods.
-Without treatment, Cf results in death for 95% of affected children before age 5.
-The median age for people with CF is about 36 years, but the number increases each year thanks to new medicines.
-About 1,000 new cases of CF are diagnosed each year.
-More than 95% of men with CF are sterile.
-CF occurs in aprox. one of every 3,500 live births.
-One in 400 white couples are at risk for having children with CF
-Each time two carriers conceive, there is a 25% chance that theit child will have CF, a 50% chance the child will be a carrier of the CF gene; and a 25% chance that the child will be a non carrier.
-More than 10 million Americans are unknowing, symptomless carriers of the defective gene.
-The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage.
-CF appears usually in early childhood where diagnosis is most important. Today, mother's can be tested while they are pregnant to see if their child will have CF.
-There are more than 1,000 different mutations of the CF gene.
-A sweat chloride test is the standard diagnostic test for CF. A higher amount of salt found in the sweat indicates CF.
-To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.
I have denied, gotten very angry, cried ALOT..... Finally accepted that this is real and I can't fix it. Now what.... ? I just go on, Tyler is a perfectly normal 3 and 1/2 month old baby. The enzymes, the salt in his bottles, the airway clearances....etc. Its all normal to me now. I do get very nervous taking him for his cf appointments. But I think that's because I still have so many questions. Usually the doc's response is"we have to wait and see", I'm trying to get used to that too. The unknown is the hardest part.
This is the beginning of the first ever blog for the Hendricks Family...Bear with me I am new to this! I'm hoping to share with all of our family and friends Tyler's footsteps through life with Cystic Fibrosis and how it affects us all as a family.
In August of 2009 I was blessed with my fourth child. Having a 15, 13 and 8 year old at home I thought number 4 would be a breeze. First revelation...don't ever assume anything is going to be easy just because you have done it before! Three previous pregnancy's no problems but with the fourth by 13 weeks I was on bed rest. I struggled through the rest of my pregnancy not knowing day by day if we would make it the whole nine months. Bed rest and meds I did make it. I was induced on August 26 2009, a few weeks early. The longest most painful labor and delivery of any of my kids. Tyler was officially here and he was perfect. All of my fears of something just not being "right" for the last nine months vanished, after I counted all his fingers and toes of course. I held a perfect little newborn. We went home and for the first week everything was perfect, normal, newborn baby stuff. No sleep, stumbling around in the middle of the night making bottles. It wasn't until his first week check up I had any reason to think anything was different with him. I don't remember much of that day really, everything was fine, and then the doc said "We had an abnormal result come back on Tyler's newborn screening...I want you to repeat the test today... its possible he has Cystic Fibrosis.." Then all I heard was blah blah blah....my head was spinning, I got sick to my stomach even though I had never even heard of cystic fibrosis, I knew in my gut it was bad...We did the repeat newborn screening but had to wait a week for the results. I came home and googled Cystic Fibrosis....and then I held Tyler and cried...and cried. 10 days later with the results of the 2nd newborn screening and a sweat test Tyler was diagnosed with CF. Our lives are forever changed by his diagnosis, but thankfully with all the information and support I have received from my new found Internet family I can finally look into Tyler's baby blues without bursting into tears...